Canadian Journal of Disability Studies Special Issue: Survivals, Ruptures, Resiliences
Esther Ignagni, School of Disability Studies
Ryerson University, Toronto
Eliza Chandler, School of Disability Studies
Ryerson University, Toronto
Kim Collins, School of Disability Studies
Ryerson University, Toronto
Andy Darby, School of Computing and Communications
Lancaster University, UK
Kirsty Liddiard, School of Education and Institute for the Study of the Human
University of Sheffield, UK
This paper critically reflects on our attempts to design access with disability artists and designers.Together we engaged in a project to co-design and co-create a fictional near-future world that would enable us to interrogate our present techno-social dilemmas. Accessibility was central to our workshop for the way that access is always central to enacting crip, mad, Deaf, and spooniecommunities. Without access, we cannot meet, discuss, share, struggle, fight, dismantle or create. Crucially, access was tied to our desire to co-create crip near-futures. Crip near future, a methodological intervention we engage in our work, refers to a temporal period a few years from our present day. It is a future close enough for our individual experience to be and remain directly relevant, yet distant enough that the boundaries of our experience could be ‘cripped’ - expanded, revised or ruptured - by technological trends. Crip near futures also promise our survival and reference our resilience in the face of past and present ableist violence. Our presence in a crip near future suggests that we have somehow disrupted the current normative order. In alignment with our methodological orientations then, our work sought to disrupt normative artistic and design studio practice to open a space for crip, mad, spoonie and Deaf artists to imagine worlds in which our body-minds are anticipated, welcomed and integral. In what follows, we describe our work and the steps we took to transform it into an accessible space where we could interdependently imagine and create future worlds. Our reflections pivot to consider how access is an “unfinished project” (McKittrick, 2013), always in tension with the demand for individual resilience within the neoliberal university.
In August 2017, we brought together six artists/designers from the disability, mad, Deaf, and spoonie communitiesto work with us in a week-long studio-based workshop at Ryerson University.This workshop was part of an ongoing research initiative between Ignagni, Liddiard, and Chandler called Thinking with our Chemical Stories. The larger project explores how disability is animated in relation to chemical interactions, death, vitality, and futurity. For many disabled people, our lives and futures depend on consensual and non-consensual interactions with chemicals (such as medications, cleaning products, hormones, recreational drugs, sunblock, among others). However, within popular discourse, disability is narrated as the undesirable consequence of chemical contact (e.g., with everything from plastics, to opioids, to environmental pollutants). Disability becomes part of a cautionary tale equally at home, in public health recommendations, or environmental justice activism. Drawing on posthuman theories (Chen, 2012; Kafer, 2013; Braidotti, 2013) Thinking with our Chemical Stories sets out to interrogate how disability futures are dis/articulated within chemical encounters. Within the design fiction workshop referenced in this paper, we were interested in exploring how disability could be re-imagined and re-storied as a desirable way of living within chemical encounters; as vital, generative, and pleasurable, rather than as simply a condition amidst the short temporal period that precedes death.
For this one week in early August, six artists and five academics gathered in the back room of Ryerson University’s Re-Lab, an impromptu maker-space studio, to produce a design fiction. Each day we passed through the lab space, brimming with tech innovations: a climbing wall rigged with signal lights and auditory sensors for Deaf and blind climbers; a 6 x 8 foot table that doubled as a smartpad; a scent fridge filled with the ingredients of the finest perfumes to mundane aromatherapeutics; and so forth. In the back room, the 11 of us squeezed around a boardroom table, with Maxine, our real time captioner tethered to the far end of the room translating everything we said to a large projection screen. A PA system took up another corner of the room, ready to amplify our voices through hand-held mics. Andy, our facilitator, squeezed his way around the perimeter of the room, pinning up flipchart paper and brightly coloured post-it notes to capture our ideas as they formed.
The week culminated with the co-creation of a real-fictional ‘painsuit’ concept - a networked garment made from a blend of organic and vibra-tactile technologies, that functioned as an alternative to pharmaceutical pain management interventions. Within the story-world we sketched for it, the painsuit addressed how pain is perceived and experienced in relation to our bodies, selves, environments and one another. The painsuit and its story-world, populated with professionals, bureaucracies retailers, therapeutic congregate pain-management clinics, counter-hegemonic protest groups and suit-hackers, does not exist. Like all design fictions, we were not trying to create an actual pain management system, but instead create discursive and imaginative opportunities to think about the crip futures we want and need.
We pause here to briefly explain design fiction, a form of speculative design, that combines elements of science fiction, science fact, and critical design to create diegetic prototypes (Kirby, 2010), that is, prototypes that exist within ‘story-worlds.’ Using near or plausible future technologies (e.g. apps, networked vibra tactile fabrics), within a fictional world-building context, design fictions are provocative, creating discursive space to ‘suspend disbelief about change’ (Bosch, 2012, para. 3). Both in the process of their creation and dissemination, design fictions raise questions, explore legal, ethical and social debates and generate critical insights about techno-social dilemmas (Lindley & Coulton, 2016; Blythe, 2014).
In the workshop, Andy Darby (Tsekleves Darby, Whicher & Swiatek, 2017a; Tsekleves., Darby, Whicher, & Swiatek, 2017b) led us through a series of design fiction exercises to generate speculative stories, products, and services that invoked and reimagined our chemical encounters as disabled people. For instance, in an early exercise intended to help us practice speculative lines of thought that incorporated technological innovations and trends, Andy gave each of us a small object (thimble, figurines of a dog, a door key, an iron, a paint brush, etc.). He asked us to consider how our unique object was a technology, in what tradition it was based, what the assumptions that made it work were, and where it was going in the future. We shared our reflections, chiming in to contribute our thoughts as others spoke. To follow a specific example, one artist offered a technological narrative for the iron, recalling her struggles with starching shirts as part of her girlhood chores. Collectively, we imagined the obsolescence of the iron, as other chemical technologies shifted the production of fabrics such that they required less ‘pressing’. The conversation shifted further to consider future fabrics that could interact with the body’s chemistry to both produce health effects or offer protection from harmful environments. Similar conversations unfolded around each object, many with direct relevance to chemical encounters. We considered, for instance, a dog that offers companionship and unconditional love, mitigating the effects of psychic distress and almost enhancing one’s access to life. Part of what supports the dog and animating access is the use of chemicals - flea collars, dog shampoo, even its kibble and vaccinations.Yet some of those very chemicals are harmful to both ourselves and animals. Andy used this tension to push our speculative thinking to explore where our ‘healthy’ companionship with dogs, and other dilemmas, might go.
Leading successive exercises, Andy helped us collectively imagine a near-future world where, for example, the off-gas from non-toxic markers would offer children ‘useless superpowers,’ special skin creams would shield our bodies from harmful pollutants, and networked garments that would offer an alternative to pharmaceutical forms of pain-management. Each of these near (and more fantastical) future products were embedded within story-worlds; we imagined who would use these products and how. We anticipated the problems they addressed, the markets they tapped, the resources needed to create them, their alternate applications, and their unintended effects. We described, sketched, built, revised, and played with different possibilities, presenting and critiquing one another’s ideas in turn. Alternately ‘hands-on’, discursive and affective, the workshop process was critically contemplative, leading us to revisit personal chemical injuries and ‘cures’, while also debating chemical stories that circulate in the general public. In the context of the complexity of the workshop, access was more than an instrumental matter, but called on all workshop participants to think about access expansively, creatively and interdependently.
Before we move on to discuss how we envisioned access
for the workshop, we sketch out several concepts we use throughout the
paper. We begin with ‘creative interdependence,’ which acknowledges that
art-making is often not an independent process. We use the term to describe
the artistic ‘coming together’ that occurs within art-making when one artist
assists another and to assert that the requirement for assistance does
not compromise the artists’ autonomy or authorial voice (Chandler &
Ignagni, forthcoming). Grounded in an intimate attentiveness to one another,
creative interdependence fosters work that is generated independently-together.
This practice is deeply political for its refusal to abandon one another
to the dis/ableist weight of neoliberal demands for self-reliance (Mitchell
& Snyder 2015; Saldhanda, 2004).
The second key concept is Aubrecht’s (2012) understanding of resilience as “positive adaptation in the face of adversity” (Cassen, Feinstein, & Graham as cited in Aubrecht, p. 70). As Aubrecht notes (2012), resilience serves as a disciplinary technology, driving our attention to individual coping and adjustment practices and away from structured economic and social injustice (p. 70). Aubrecht’s work is particularly helpful, as her analysis is situated within the neoliberal university, governed by imperatives set out in research funding and university bureaucracies. It was precisely this context that shaped our workshop.
Third, we hold an understanding of access that goes beyond liberal bureaucratic procedures to involve an attention to the exclusions created through intertwined systems of power. Thinking with Berne (2017), we hold that social arrangements which align with white supremacist, ableist, heteropatriarchal, classist and neocolonialist power relations only anticipate and welcome body-minds congruent with normative demands. As Withers (cited in Erikson, 2015) asserts, access is relational, accomplished both through everyday mundane interactions and “collectively, across bodies, boundaries and borders” (p. 32). Access, then, is something we strove to co-create within the workshop, in the hopes of establishing the conditions for creative interdependency. Throughout our reflections, we highlight the place of access requirements within our overall approach to access. While we experience discomfort with the term and concept ‘access requirements’ for the way that it individualizes access, we use this term to refer to the elements of access which must be negotiated at the individual level through disability/human rights frameworks. Our understanding of how this negotiation works within an access project is evolving for ourselves, perhaps as within broader disability communities.
In the following sections, we discuss how we collectively enacted access in these workshops by creating the conditions for creative interdependency by attending to artists’/designers’/researchers’ access requirements in an ongoing way in order to minimize and mitigate the requirement for individual resilience. We also reflect on how we failed in these efforts, and how these failures are critical disruptions in which we reiterate resilience or opportunities to consider the fracturing and complication of access that proliferates our possibilities for crip survival, vitality and futures.
Prior to and during the workshop, we attended to how disability might contour the workshop space based on our combined past learnings. As individual research team members, we all have experience with running disability community-facing arts-based research workshops (and we have all worked together in various configurations). We held a “shared understanding” (Bauman, 2001) that strong but flexible accessibility practices needed to be enacted in order for us all to engage in this studio-based workshop. Our approach to access – specifically our attempts to plan for access requirements (such as print alternative, wheelchair accessible and gender neutral washrooms) – hinged on our desire to minimize the requirement for resilience as it is described by Bracke (2016) as, “foreclos[ing] our chance of developing the skills to imagine otherwise” (p. 69).
We engaged in three lines of activities that would create an accessible workshop and allow us to lessen the demand for individual resilience. First, we distributed an access survey to all participants in advance of the workshop to ensure everyone’s access requirements could be addressed as we were developing our access plan. Second, we developed an Access Guidebased on insights from our previous community organizing including our failures, our pre-existing relationships with the artists/designers attending the workshop, and the responses from the survey. We circulated this guide to artist/designers prior to the workshop. The practices in the Access Guide reflected an intersectional approach to access - using pronouns, asserting space for BIPOCvoices and perspectives, offering trigger/content warnings - and establishing communal practices, such as image description, real-time open-captions, crip-time flexibility, speaking through a microphone, and so forth. This guide also included a description of how the workshop would, or might unfold and introduced the artist/designer participants, the facilitators, the researchers, and the support people who would be part of the workshop. This information served as a point of access for it communicated to people what to expect and what was loosely expected of them each day. Although daunting at first glance, this eight-page text was meant to allow people to plan and take care of themselves accordingly. Upon reflection we recognize that this desire for participants to take care of themselves is an act of resilience. Finally, access check-ins were used to open each workshop day. They established a time for people to share feedback about their experience of workshop accessibility, and alerted others to if they were unable to participate as they desired.
This multi-pronged accessibility plan was anticipatory and responsive out of a genuine desire to design a crip, mad, and spoonie creative makerspace, spaces that are relatively rare in Canadian arts culture. We know that when our presence as disabled, Deaf, mad, and spoonie people has not been anticipated and our access requirements are not taken into account, we assume the labour of making space accessible, functional, safer, and welcoming.
Establishing the conditions in which creative interdependency could be enacted was central to our access commitments. Creative interdependency builds on Mia Mingus’ call to embrace ‘interdependence,’ in order to move away from the “myth of independence” that dictates, “everyone can and should be able to do everything on their own” (2011, February 12). Within creative endeavours, interdependency involves the relational and communal bonds of support - distinct from accommodation and collaboration. These bonds enable creative work. We anticipated that access would provide the space to attend not only to freely imagine and pursue one’s design vision, but also offer the room to articulate and respond to the mutual and diverse requirements for creative exploration and realization. Unfortunately, our attempts to create access did not fulfill this promise. Rather than allowing creativity to pursue a languid, wandering, open or crip trajectory, our practices promulgated a neoliberal ethos. In the next section, we reflect on ‘access failures’ as we think through how our access plans for the workshop may have collapsed - albeit inadvertently, incompletely and perhaps necessarily - back into the contemporary insistence on individualized, self-defensive resilience (resilience that is connected to our institutional survival). We centre our analysis on three ethics that structure access practices: access failure, access as unfinished, and access as progress. Recounting specific moments of access failure, we suggest that creating spaces in which body-mind difference may be anticipated, embraced, and celebrated may rest on a greater attention to the practices of creative interdependence itself.
It might be helpful to pause and consider the nature of ‘failure’ itself. Failure is a condition of our neoliberal cultural and political context. As Halberstam (2012) notes, failures are generally attributed to individual deficits in capacity or effort. They are rarely acknowledged as the inevitable yet perhaps necessary product of our competitive individualistic systems. Working in tandem with surveillance, failure is linked to the imperative towards improvement and remedy. Those who fail are expected to continue to strive for success enacting the Calvinist adage ‘if at first you don’t succeed, try, try again.’ Our experience within the neoliberal university is that access failures are recuperated; they must be avoided in order to prevent institutional liability, then lucratively re-packaged into competitive signifiers of good corporate citizenship, social innovation or thin commitments to equity, diversity and inclusion.
Like others engaging in community-facing disability activism and advocacy while situated in the neoliberal university, we find ourselves caught between perception and obligation. As a public institution in Ontario, the university is mandated to meet the Accessibility for Ontarians with Disability Actstandards (AODA, 2005) and is perceived by its community collaborators as privy to limitless resources to realize and better these standards. University resources can exceed those of community arts organizations; but the scope of their deployment is narrow. Institutional practices usually guide us to mobilize resources to established infrastructural access such as ramps and automatic door openers. Requirements that fall outside the conventional understandings of accessibility such as real-time captioning, heating, ventilation, and air conditioning (HVAC systems) or plain language translation are left to individual university staff and faculty to resolve. Increasingly we find ourselves attempting to formulate accessibility strategies that fall outside of ‘accepted’ AODA compliance. Because the university accommodations often do not align with disabled, Deaf, spoonie, and mad people’s lived experience of ableism, sanism, audism, and inaccessibility, we have incorporated this labour into our expected research planning work and we are often pulled into acting as experts in areas in which we do not have training.
Shortly into the design fiction workshop, we noticed that our efforts to create access were blunted. The Access Guide and survey seemed to foreground our commitment to hospitality, sensitizing everyone to the potential for exclusion and prompting many collective conversations about the power relations inherent within the workshop processes. However, there were moments in which this attention to access seemed to reiterate the very conditions we were attempting to disrupt. Despite our efforts to anticipate any requirement that might arise and offer as much information as we could about the process, complete information was and is never possible. Indeed, for many material reasons, participants did not wade through the lengthy access and workshop information distributed in advance of our first meeting. Consequently, many moments that called for resilience arose – keeping the labour and power relations of access firmly in place. For instance, design fiction was an unfamiliar approach for the artists and several of the academics. While we had provided references and description prior to the workshop, many elements of the approach could not be grasped in advance of their practical application; it wasn’t easy to imagine what access requirements might arise in deploying the approach.
As we started to play with design fiction, its reliance on provocation, irony, and subversion of desire in order to expose, oppressive social arrangements became acutely apparent. And this play sometimes worked against our access plan. Workshop proceedings would pause as distant sorrows were triggered or buried memories surfaced. For example, in one exercise the artist tentatively sketched a world in which the mainstream media was documenting parent activism to ban non-toxic markers from schools. In this fictional near-future world, the ostensibly benign fumes from these markers gave children ‘useless superpowers,’ including hovering 10 centimeters above the floor and the capacity to decode birdsong. In the near-future world we created, news accounts reported on increasing levels of domestic disarray as children reveled in their new-found abilities. The group’s initial response was amused delight - prompting reflections on childhood imaginaries and some cheerful debate about the merits of hovering. Before long, the conversation took a somber, reflexive turn, as Indigenous participants were prompted into recalling their childhood circumstances and the damage rendered to separate families by colonizing education systems. In moments like these, participants necessarily claimed time and space to reflect and re-group. Personal responses to these moments were debriefed in our daily ‘access check-ins.’ These check-ins, initially intended to air emerging common concerns and foster ongoing workshop re-design in response, devolved into a citation for individual access needs. It fell on Andy, the facilitator, to defend the approach, while simultaneously attempting to make space for and mitigate its affective and emotional impact in order to maintain the workshop’s accessibility.
Access was also disrupted because honouring individual confidentiality meant that we did not share the responses from the access survey with participants. Consequently, participants were unaware of the requirements of others and often lacked the information needed to contribute to ensuring access for all. For instance, not everyone understood what it meant to work with real-time captioning and therefore spoke very quickly or spoke over one another. Providing access in this instance would have required a successful blending of access support (live-captioning) and interdependence (‘speaking in turn’). The access support was fairly consistently provided, but access was not achieved through the live-captioning alone. Captioning provided the fundamental conditions on which access could be enacted. When we were working together as an interdependent group, access was achieved. When our interdependence broke down as voices bloomed into a cacophony of voice, access also broke down. The responsibility fell to the researchers/hosts to create the necessary, and sometimes contested, conditions for access through reminders and correction, entrenching our positioning as ‘leaders’ and guardians of participation. As these and other access failing began to accrue, we wondered if it was possible to approach access we had initially envisioned.
The ‘Unfinished’ Project of Access
We can consider access as an “unfinished project” (McKittrick, 2012, p. 12), built upon the insights of experimentation and past failure. Access, as a means to disability futures, is only imaginable within the history of dis/ableist injury, exclusions and neglect. In a sense even the access survey created for this project was premised on an implicit archive of past access failures, cast forward in time to their anticipated containment and remedy.
On the surface, the workshop was underpinned by and generated its own access failures - lines of activities and plans gone awry or not far enough. Indeed, artists and researchers often find themselves in situations wherein plans for access (or dimensions of collaborative work) are scaled back or prematurely truncated (see Chandler & Ignagni, forthcoming). As an extremely mundane example, wanting to be good hosts, we put considerable thought into how to provide lunch for the artists and ourselves. We were motivated, in part, by an awareness that food security is part of intersectional access. Providing food that is acceptable, readily available, does not exacerbate symptoms associated with chronic sickness, can be eaten with dignity, and avoids the ‘disability diet’ of pizza and juice (or equivalent) that dominate the menu of many North American disability-related events, sustains and nurtures crip individual and communal flourishment. We located a nearby café, an independent, accessible, community enterprise, and made plans to move our group off-site to the designated lunch spot each day. Our first foray was quickly thwarted; the 3 minute trip from workshop to café, across the outdoor paths surrounding Bell-Trinity office complex, extended to 15 minutes with the business lunch crowds of downtown Toronto. The 33 celsius sun beat down on us as Esther, our guide, tapped her way down unfamiliar ramps and curb-cuts, through a disorienting sound scape of buskers. We circled the church adjacent to the cafe, at least twice only to be met with further frustration! The primarily disabled cafe employees, indulging in crip time and the right not to work, spontaneously had ‘gone fishing’ for the day!
Undaunted, we re-grouped and shepherded everyone to another cafe, in air-conditioning, with the shortest queue of customers. We positioned ourselves at the check-out, paying for meals priced at typical Toronto rates of around $20 per person. With the budget constantly on our minds we found ourselves engaged in continuous mental calculations each time the cash register rang. Clutching fistfuls of receipts we could never claim and re-coup, we decided to forego lunch ourselves, in favour of spare granola bars we kept in our backpacks (a martyr-like yet poor decision that only left us cranky).
Despite our effort to be preemptive, our access plan turned back on itself. We were now behind schedule. Artists (ourselves included) were tired, and our food budget was in disarray. In terms of the project as a whole, these material, concrete ‘trade-offs’ also meant we had less time together to work as a team, our design work was just a little less nuanced, we had to backtrack the following morning, and so on. Each of these compromises entailed new access dilemmas, offering us a better sense of how much we needed to do, but also alerting us to the incompleteness of access work.
In a sense this example, while hardly integral to the scholarship or activism of the project, illuminates the degree to which resilience is the purview of the privileged (Evans & Reid, 2014). Access failures cause us to bump up against the materiality of restrictive budget lines as we ourselves fall trapped in the very neoliberal discourse of disability as excessive demand. We, like many researchers, attempt to leverage our privilege -- our salaried labour, time, or money-- to individually, make up for the ways that our projects fail our collaborators and ourselves (Owen & Harris, 2012). In the example above, we ensured that the project could ‘bounce back’ from the demands placed on it by attempting to ensure access. But to do so, we confirm, rather than subvert, the demand to ‘not fail.’ We deploy our privilege in an overcoming exercise and its costs on the body-minds that are rendered ‘too much’ by its logics. Even as we recognize and fiercely critique neoliberalism and desire otherwise into the future, our designs for the future are restrictively determined by the way neoliberalism holds us now in the present.
Access as Progress
With each felt access failure, we began to concertedly assess workshop processes and substance for their exclusionary potential and their reiteration of existing power relations. Drawing on our discussion of how access is enacted in (and constrained by) the neoliberal university, in this section we describe how crip cultural practices, like access check-ins, both served to bring together crip community but also provoked us as organizers to direct the group back to a neoliberal timeline of progress.
One example of how access became tied to progress surfaced in our debates about the daily access check-ins. Access check-ins described above, were meant to disrupt the neoliberal assumption that access can be instrumentally and efficiently planned in advance and never revisited. The check-ins operated as scheduled times to return to the question of access throughout our work (Fritsch, 2014; Titchkosky, 2011). They provided opportunities for participants to collectively identify the access failures in the workshop and the ways it was becoming inaccessible. These check-ins also created a space to acknowledge our body-mind differences and how they shift across space and time. They demanded that we know our own and one another’s bodies anew, producing new forms of self and other-oriented familiarity. Indeed, they became integral to building connections among artists since intimacy emerged as we tapped into and shared aches and pains, energy levels, tensions, feelings of disquiet, and memories that were provoked by aspects of the workshop. In practice, these access check-ins did disrupt normative temporal arrangements of university productivity. And it worked: participants (including ourselves) felt open to share how the workshop could be improved to enhance everyone’s participation. Pursuing creative interdependence, we all took responsibility for attending to these emerging access points; indeed, we required a collective response to uphold our access commitments.
All of this takes time; a week can go by quickly particularly when discussion time is devoted to reflections on process. During the workshop, Andy, conscious of his role as facilitator, worried we were not developing and refining our design fiction quickly enough. From his position as a designer he repeatedly asked Esther, Eliza and Kirsty if the project’s research questions were being answered, if we were learning enough about the design fiction approach, and if we could see viable outputs from the workshop. His concerns were understandable because his investments in this project were primarily with the creative work and ultimately with the refinement and dissemination of the design fiction. By his own admission, he wasn’t familiar with nuanced attention to access and was feeling unsure about how to adapt his practice accordingly.
Andy’s concerns resonate with all of us engaged in academic research. The project needs to progress, we need to keep moving forward to generate outputs or deliverables - that mark our projects as successful. Although we knew that access was necessary for the successful progression of the workshop (to allow us to be in the space and share stories, ideas, and art-making together,), it occurs to us now that our investment in access was also tied to a neoliberal sense of progress in ways that were not immediately apparent to us at the time.
By presenting access as an ongoing, collaborative process and achievement, we unintentionally introduced a dynamic of progress-- an assumption that access would become more and more effective the harder we worked at attending to its enactment. As ‘hosts’, we felt it our responsibility to make sure everyone was participating as they wished and required, so we moved in to ‘correct’ potential sites of exclusion to help steer accessibility back onto the path of progression. This may have helped alleviate our discomfort with our (failing) hospitality, particularly when bringing community into the ableist, colonial, and inflexible space of the university. However, these corrective moves worked against our initial vision. Access became a product in which we became the providers, and the designers and artists became the consumers.
We found ourselves reassuring Andy that good access was key to keeping artists/designers on board - it was what the university could offer without reservation. Just as the granting structure required that the potential outputs and dissemination remained on the horizon, they implicitly demanded us to retain and strengthen collegial and community relationships. Access as a product not only ensures progress, since it, crassly put, keeps participants engaged by offering them the impossible, but it is a marker of progress in itself. As we elaborated above, it is a marker of the university’s progressive stance on disability (even as many disabled students are refused entry, sent on mandatory leave, forced to disclose and comply with costly medicalized diagnosis, alternately constructed as demanding, shirkers and inspirations or left to fend for themselves). Access has value to the university when it contributes favourably to its public profile, when it engages new publics, brings in increased research dollars or can be packaged into plans, protocols and schema and monetized.
These institutional pressures oriented us to our survival as researchers operating within the university and, at times, clashed with our desire for access. As Brown (2016) notes, we can create social justice oriented spaces in which a “culture of perfection” pervades (para 14). We’d like to think that our desires to correct failures via the access check-ins were connected to an awareness of how systems of power came together to (potentially) exclude in moments when resilience to inherent dis/ableism broke. But in the absence of the capacity to shift these structures, the tendency was to redirect the change inwards. In effect, although intended to resist the neoliberal demand that access be initially noticed and then forgotten, the access check-ins also opened us up to the tense possibility that we fail, and fail knowingly. And with that failure came the imperative to watch ourselves to do better - “fail better” - next time (Halberstam, 2012).
Operating within dynamics of progress moves access from a relational to a unidirectional project in which organizers and researchers carry the weight and emotion of access (Mingus, 2011, May 5). Working within the neoliberal university requires us to enact the social interpretive process of envisioning access to account for the complex interplay of systems of power, while also ensuring that access fits the market mechanism (see Foucault, Davidson, & Burchell, 2008, p. 73). We are drawn into a scaffolding of regulating practices in which we flex with the competing ethos - alternately molding ourselves into good political organizers, collegial collaborators, attentive hosts and disciplined, productive scholars. Thus we render ourselves useful to the university. As Shamir (2008) states, we become responsibilized employees: “creative and innovative persons who nurture [their] own ‘employability’ on the basis of his or her … skills” (p. 8).
Moving Towards Interdependence, Resilience, and Survival
A workshop premised on collective imaginings and designs towards a crip future, even one that is not necessarily affirmative, requires us to enact an accessibility that goes beyond expected structural protocol. Our approach to accessibility must be nuanced and iterative, be flexible and resourced in a way that allows us to respond to unexpected access requirements as they arise, and allow for creative interdependence to be enacted. And in this approach, failures inevitably happen. Halberstam (2005, 2012) suggests that moments
of crisis or failures can turn dark landscapes, into horizons of possibility. Failures can be reinterpreted as creative and generative: they can be deployed to foster collective and collaborative alternatives to our contemporary structures of knowledge and structures of society that depend upon binary, linear, and inequitable normativities. According to Halberstam, failure can be “productively linked to social justice struggles (such as anti-colonialism and gender fluidity), and to different formulations of the temporality of success” (2008, p. 56). Halberstam focused on the common or shared experience of failure as the basis for these potential alternatives. Failure – typically thought of as leading to estrangement, can be reclaimed as a condition of camaraderie and community.
So while the university might nudge us towards smoothing over, pushing through or overcoming our failures as an act of institutional resilience, we might proceed differently. We could, with Halberstam, query how access failure might be reimagined, and towards what kinds of desired political outcomes? What kind of pedagogy, what kind of epistemology lurks behind those activities that have been awarded the term failure within the context of university research (Halberstam 2012)? For instance, we could think of access failure as generating sites of creative reflection. In this design fiction workshop, creativity arose from and responded to moments of access crisis - moments of pain caused by sitting too long, walking too far, sitting under fluorescent lights, reviewing painful memories, being triggered repeatedly. Each of these painful moments, whether physical or psychic, signaled a rupture or disjuncture between the body and environment - each small instances of ‘access failure.’
One strategy, taking from the painsuit, the prototype conceptualized in our workshop, would be to resolve or endure the pain of these access failures - and certainly we sometimes did just that. However, we also rested with those failures, using them as moments of creative genesis. Since conversations and comments about pain figured so prominently in our efforts to ensure access, it seems hardly surprising that managing pain drove the conceptualization of the design fiction: the painsuit and a near-future world in which the relational genesis and experience of pain could be modulated interdependently. As it evolved, the painsuit concept did not promise the ‘end to pain’. Instead, the design fiction - casting us into a preferable future enabled us to consider how and what pain gives to us in the present. We began to think about, for instance, the relational dimensions of pain, the possibilities and potential as well as the debilitation that comes with physical and psychic pain. The ways in which pain makes us disruptive to and productive within neoliberal economic systems and the ways in which pain instructed us about our bodies and selves.
Thinking through how the pain associated with access failures can be generative is somewhat ambivalent. The painsuit demonstrates, rather too well, how productive the disruption of hosting disabled, mad, Deaf, spoonie bodies can be for the university. The project translates into CV entries, new contacts, new projects and new publications for us individually - and for the institution as a whole. Have our access failures been well and truly rehabilitated? Yet the painsuit and its world aren’t real and as such are not material in a sense that is still profitable within advanced capitalism. The painsuit, while drawing from trends in profitable networked objects, can’t be patented, commercialized or commodified. It cannot treat or fix pain - indeed, it’s provocative potency lies in its capacity to critically illuminate the market forces in the mitigation and intensification of pain, which in itself might be uncomfortable and disquieting in its realization. Perhaps parallelling the imagined work of the pain-suit, reflections on our access failures won’t ‘solve’ the problem of access, but lead us toward the relational dimensions of access.
Access failures more practically generated the chances for creative interdependency - disrupting our process to produce new ways of working and imagining together. In this final section Kim, reflects on one such failure.
It was Friday, the last day of the workshop. The day that it would all come together, or so we hoped. That morning, however, we were thrust into crisis. The previous afternoon there had been a chemical spill while others using the lab refilled the 3D printer. Everyone left the lab and the HVAC system was set on full blast. But the potential effects of these chemicals for the Mad, disabled, spoonie artists were too great. So on Friday morning, we, the organizers, sat in the corner of a lab scrambling to find an alternate location. Could we stay here? Could we move to a new building? But what about those who had difficulty walking distances? Did that other space have circulating air? What about the artists who were already in transit to our location?
Leaving the lab we, the organizers and artists/designers, congregated in the large outer lobby. Passed by people in power suits on their way to work, we discussed how we might salvage the day. Collectively, we decided the best option was to relocate to the lower lobby where there were larger tables that we could (hopefully) occupy. The decision made all of us take stock of what needed to happen and divided tasks. What were the essentials that we could remove from the lab? Who could enter the lab to retrieve these items? Who could carry these items? Who could head downstairs and claim space? Who could leave and purchase new items to replace those tainted by the chemicals? Who could hold the elevator? Once ensconced downstairs, the crisis passed, and so to did our moment of relational, interdependent access.
The community tentatively structured during this workshop did not hold a singular understanding or desire for what the near future might hold and the kinds of near future products that could mobilize a critique for our contemporary moment; ours was not a community built on consensus. However, following Bauman (2001) as he writes, “‘community stands for the kind of world which is not, regrettably, available to us—but which we would dearly wish to inhabit and we hope to repossess” (p. 3), ours was a community dedicated to building toward divergent, common futures.
Imagining access from within the neoliberal university is double edged. The space of the university-- its resources, human, technological, and otherwise-- allows us to enact a developed, robust, and responsive accessibility standard that may not be possible in other spaces. However, we are always limited to the ways that the university imagines accessibility, which tends to follow a neoliberal logic of identifying a problem, individualizing that problem, and creating a solution that is motivated by cost effectiveness rather than disability politics. This approach to accessibility, as we know from our own experiences, is aimed at giving us access into normative orders and systems, which, regardless of what the structural access provides, requires disabled people to engage in resilient acts. Once again following Bracke (2016, p.69), opening up (instead of foreclosing) spaces to imagine crip near-futures otherwise required us to continually enact an iterative and responsive accessibility protocol. And this requires us to take on the labour, as well as the failure, of filling in an accessibility standard where the university gaps, acting as a medium between knowing our particular community and its particular requirements and knowing how to create accessibility, performing expert. In this workshop, the only way we could figure out how to bridge this gap was to fall into and uphold neoliberal scripts.
Under these conditions, we have to wonder if it is possible, and correspondingly responsible, to tell our participants that the workshop will be accessible and we will meet their individual and collective needs. As much as we have the collective knowledge and desire needed to imagine access (to shifting standards), the university may not be the location to achieve this commitment. And those of us working within it may always require resilience, both in ourselves and from those with whom we are working. We plan for this future, a crip future, perhaps, with knowledge based on learnings, experiences, and particularly failures from the past. As we are directed into the future by what we know of the past, we reflect on the conditions of the past and present for how and what they forecast. Based on what we know of the past, we know that we will fail in the future. It will be impossible to enact wholly hospitable crip communities under neoliberalism.
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The distinction between artist and designer is ambiguous. The International Artists Association defines a “professional artist” as one who: “earns a living through art making; or possesses a diploma in an area considered to be within the domain of the fine arts; or teaches art in a school of art or applied art; or whose work is often seen by the public or is frequently or regularly exhibited; or is recognized as an artist by consensus of opinion among professional artists”. Taken from CARFAC (2016). Retrieved from: https://www.carfac.ca/membership/who-can-join/In broad terms a designer is a person who imagines how something could be made and draws plans for it: examples a fashion/software/theatrical designer" taken from Dictionary, C. (2015). Cambridge dictionaries online. Retrieved from: https://dictionary.cambridge.org/dictionary/english/designer ↑
The term spoonie refers to those who live with chronic conditions. Miserandino, C. (n.d.). Retrieved from: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ ↑
Throughout this paper, we interchange the terms ‘disabled, Deaf, mad, and spoonie communities’ with ‘disability community’ and ‘disabled people.’ ↑
This project was funded by the Women’s Xchange Challenge fund and administered through the Women’s College Hospital in Toronto and by a Seed Grant from the Faculty of Community Services, Ryerson University. ↑
This was an intellectual inquiry project funded by the Faculty of Community Services at Ryerson University. Liddiard’s intial work can be found at: https://chemicallives.wordpress.com/author/kliddiard/ ↑
The captioner has been given a pseudonym. ↑
The connection between dogs and chemicals was raised by a participant in a Thinking with our Chemical Stories roundtable facilitated by Ignagni and Liddiard at Lancaster University in April 2016. ↑
Include Arts UK http://www.includearts.com/ ↑
Black Indigenous People of Colour. This term gestures to the fact that Black and Indigenous people endured the brunt of racist and colonial violence in ways different to the experiences of people of colour. ↑